For 35 years, Hospice 'a place like no other'

Anita Denny thought she wouldn’t have her husband Jack for very much longer.

His body ravaged by cancer – melanoma that they thought he’d beaten five years earlier but which came back with a vengeance in July – he wasn’t eating, he wasn’t drinking much, he was suffering pain and was having trouble breathing.

But on Sept. 30 the 72-year-old retired GM Trim Plant worker was moved into one of the residential beds at the Hospice, and immediately his state of mind transformed. Instead of dying he was living.

“I think it’s a new beginning,” Jack said this week from his homey, well-appointed room, where friends had dropped in for a visit and Anita was sitting by his bed.

“He came in here and it was like night and day the change in him,” Anita marvelled. The first day, he was convinced to try half a bowl of homemade soup, then he had another, and another. “And I’ve been eating solid food ever since,” says Jack, who feels great since moving in. “I don’t know what it is.”

If he has any pain, “all I’ve got to do is ring the bell and someone is right here.” And people – the staff and volunteers – are so caring. When Anita goes to the nearby kitchen for a snack it takes a half hour to get back because everyone stops to ask how she and Jack are doing.

Visitors can’t believe what Hospice provides, says Anita, recalling last weekend when family convened for a big, festive Thanksgiving dinner in Jack’s room, where a table had been set up with linen and fine tableware.

Most importantly, she says, “I think coming here has given us more time.”

Events that raise big bucks for Hospice include: the annual Evening for Hospice event which was held Friday night; the Savour the Wine tour of local wineries; the Hospice Face to Face program that involves 500 canvassers each asking 10 people for $10; the LifeWalk held in the spring along the Ganatchio Trail; and the Hockey for Hospice tournament held during the Christmas break.

That painstaking attention to patients and their families is what the Hospice of Windsor and Essex County has focused on for 35 years, says longtime executive director Carol Derbyshire. “We have to get in there and we have to work hard to help all these people, so they don’t feel like a burden and the family’s not wearing down trying to care for this person.”

Derbyshire was one of the first 26 volunteers trained as Hospice was starting up in 1979, the first community-based hospice in the province. It has since grown and evolved, becoming a model for other hospices in Canada and around the world, and serving anyone with a life-altering illness. As the population ages, and more and more people live longer with diseases like cancer that once killed so quickly, Hospice now cares for 2,000 patients a year, up 1,000 from just five years ago.

Most of those people don’t go to the residence, which has eight beds. They’re cared for in their homes, in hospital or in long-term care. Staff and volunteers – there are almost 700, contributing a total of 60,000 hours of time annually – make 58,000 home visits a year.

And as it celebrates 35 years, it’s about to break ground on a 10-bed residential home in Leamington, with the Leamington community so keen on the idea that the hospital foundation is committing to raise $400,000 annually – the cost over and above what the Ontario government provides. Overall, Hospice raises $1.7 million each year to pay for all the extras that aren’t funded by the government. Its budget is $3.4 million.

“Windsor and Essex County has a reputation for embracing those people who need to be cared for,” says Marianne Angus, who has volunteered at Hospice since the beginning. “It’s a philosophy and way of life we have.”

She’s helped in the kitchen, the office and at reception. She’s dropped in on patients to make sure everyone has at least one home visit every day, and she’s stayed overnight in their home so the family caregiver can go to his home for some sleep and a shower.

“Nothing is impossible. We try whatever we need to try to be of service to people in need,” Angus said. “You probably catch I have a passion for this place.”

The idea came from the late Rev. Paul Chidwick from St. Mary’s Anglican Church, who was impressed with hospices in England, where the whole philosophy was managing the pain of a patient – not just the physical pain, but the emotional, spiritual and psychosocial pain. If you take care of those aspects of dying, and you help the family, then the person and family are pretty peaceful at the end, said Derbyshire.

The original idea was to have a hospice in a wing at Met hospital. But the government wouldn’t fund it. So the organizers decided they’d create a community-based hospice instead.

“In retrospect, getting turned down for the unit in the hospital was the best thing that ever happened for us,” Derbyshire said.

About 2,000 people attended the first Hospice fundraiser evening in 1979. And from there, people started calling, volunteering and donating. “It was embraced, that whole concept, right from the beginning,” Derbyshire said. Met provided free office space, Jane Boyd left her teaching job to became the first director and June Jones left teaching at the University of Windsor to become a part-time nurse, soon joined by Viola Glos.

Patients referred to Hospice in those early years were typically three to six weeks away from dying, so the work was difficult, said Derbyshire, who volunteered for several years before she was hired onto the staff.

“It was something that appealed to all of us,” she said. “It wasn’t about the money, that’s for sure, but it felt right to us and we all over the years have said we found our niche and loved every minute of it.”

Eventually, the palliative care movement began to take hold. Windsor recruited a palliative specialist, Dr. Charmaine Jones, who focused on pain and symptom management. The government improved how palliative doctors are paid, which helped attract more of them to the field.

And Hospice found a new home in a vacated school on Empress Street. Thanks to considerable donations and volunteer efforts, that site has been transformed into the Hospice Village, consisting of several separate buildings including the Wellness Centre, where staff and volunteers run 44 programs; a pain and clinic in the Transition to Betterness building; the Solcz Family Home for Children and Families; the residential home; and April’s Garden Conservatory, a 650-square-foot structure recently built by Ron and Noella Truant. The Truants came up with the idea after visiting a dying relative at a Hospice in Burlington, where the family spent many hours crowded into a gazebo.

“We learned it is all about quality of life,” said Ron, who got involved with Hospice first as a donor and volunteer and more recently as a patient. He was diagnosed with pancreatic cancer in 2012 and has been managing the disease ever since. “I’m not end-of-life by any means,” he said. “My point is that Hospice is about quality of life, accepting change and how you choose to live your life.”

While the village is an impressive place, many staff don’t spend a lot of time there, said palliative physician Dr. Sheri Bergeron. “Our work is out in the community, so we do home visits. We (doctors, nurses, social workers and other staff) go to them,” she said.

Bonnie Storey said she is so grateful that she was able to give her husband Jim what he wanted – to die at home – thanks to Hospice’s help.

“My rock was the Hospice phone number,” she said. “I knew I could call day and night and someone would have an answer to my question.”

And the palliative care doctor would call from the road and ask her – since he was in the neighbourhood — if he could drop in.

The care and concern people show is unprecedented, said Storey, who is now volunteering for Hospice.